Due to have a SCT

  • 17 replies
  • 14 subscribers
  • 1427 views

Hi guys! 

I am new to the group and I am due to have a SCT at some point, I don’t have a date yet for this. 

I am worried about the isolation period and I am just wondering if someone can give me any tips to help me mentally. 

Thank you! 

  • Thank you so much! That has helped me loads! 

    I always found the initial meeting really daunting and scary but putting it like that makes it a lot easier! 

    I was told by many nurses on the ward that the statistics are based off people that are older than me but it still didn’t settle my mind as they said that the figures are the same for someone my age too. I think reading it in the way you have put it makes it a lot easier and i understand it more now. 

    I am so glad everything went well with your SCT and you are okay now! I admire you for all you have been through! 

  • It’s important to remember that although ‘some’ of the conditionings used are very strong, they are only used for a short period of time as they can take the immune system down rather quickly.

    One of the drugs that can cause the most problems is Melphalan often found in BEAM, I had it in my FluMelAlem30 for my second Allo SCT but you will see from this thread Melphalan and ice there are ways to overcome this.

    I actually had no chemo during the conditioning for my first Allo SCT and had no real problems. My conditioning Total Lymphoid Irradiation where every lymph-node in my body was blasted with radiotherapy for 10 sessions and a treatment called ATG (anti-thymocyte globulin).

    Although my first Allo failed within 6 months I have talked with others who have had the same treatment and are still in remission years on Thumbsup

    The main challenge is catching infections after your immune system being killed off and having received the donor cells - this is why you are in a ‘safe’ controlled environment Wink

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • It’s very important to remember that although ‘some’ of the conditioning treatments used are strong they do only last a short period of time.

    The purpose is to take down your immune system quickly and get you ready for your donor Stem Cells.

    The main chemo to look out for is a drug called Melphalan but this link Melphalan and ice explains the way to overcome the effects (mouth problems) of this drug.

    The M is found in various conditionings like BEAM and the one I had for my second Allo - FluMelAlem30 and I had no mouth problems with the M as I followed the info in the link,

    I did not have chemo for my first Allo as I had a trial using Total Lymphoid Irradiation where every lymph-node in my body was blasted with radiotherapy for two weeks and a clever drug called ATG anti-thymocyte globulin….. although my first Allo failed within 6 months I have talked with others who went through the same process and they are still in remission years on.

    The main challenge is developing infections after you get your stem cells and during the time that your new immune system grows….. I actually had no infections during the process but lots of infections post the process.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi again teddy123

    My wife had 6 days of conditioning prior to her Infusion of her sisters cells on day 7.

    The clinicians call the first day of your conditioning day -7 here she had her Picc line put in and started on Fludarabine and continued daily to day -3, then one day of Melphalam on day -2.

    This was the one that can cause mounth ulcers and the reason you are or should be given ice cubes or ice pops to help prevent these, it's advisable to take these, luckily she only had one sore spot in her mouth. On day -1 she was given another drug and started ciclosporin which prevents your bodies immune system from working too fast as you need your doner cells to graft slowly with your own cells so not to attack the new ones. You will probably be on ciclosporin for a few months following sct along with antibiotics and anti fungal medication.

    She may well have been very lucky in her treatment as apart from a lack of appetite following and fatigue it all went fairly smoothly. I'm sure you will be fine and your team will be with you all the way through this.

    FULHAMBOY (nick)

  • I'm so glad I logged on to read this today. I'm a carer to my 70 year old dad who was diagnosed with AML last November. He has a pre-existing condition of Mastocytosis and we opted for the medium intensity chemo of combination Ventoclax and Azacitidine injections. By March he was in remission and in May he was referred for SCT. He's due to go into hospital on Monday!

    He's an inspiration - but it's definitely been a team effort and exercise in positive thinking. 

    The statistics are daunting, but every case is different and things are improving all the time!

    We want dad to be a poster boy for septuagenarian SCTs - ha ha. Our mantra from the Attitude of Gratitude audio hypnosis is "what if everything goes right?"  I really recommend Hypnosis Live audio hypnosis to help with mental well-being. I'm about to do mine and it really makes a difference.  

  • Hi Hagen, good luck to your father for the start of his sct for next week. Unfortunately this is not an easy process as you are probably aware. Try and ensure he eats lots before he goes in as afterwards you normally cannot eat for a time. I came out of hospital not being able to eat after my sct and was still losing weight. I am about 18 months past sct and still have no real apetite. I admit this is not the same for everyone but the containing chemotherapy is very hard on ones body. Anyway good luck and I look forward to your father becoming poster boy.

  • Hi

    I can see you have had lots of replies already. I had an Allo SCT for ALL in 2013. I was in for 7 days pre SCT and went home 16 days afterwards. Of course everyone is different and the timings depend on lots of factors.  Most of the time post SCT I was sleeping and just letting the stem cells do their magical stuff!

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.